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Oksana Kucheneva

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My story

Hello,

My name is Oksana Kucheniova and I am 35 years old. I am a self-taught painter who loves life, arts and music. For now, this is my spiritual medication, that does not let me to put my hands down (considering the complexity of the problem I have).

Let me tell you my story, maybe someone can find something useful for themselves. I’ve been having this illness for more than 12 years. For more than 12 years I have been “locked” up at home. In 2010, all doctors gave up on me, saying they can’t help and suggested to look for a help outside the country. And to pray. My relatives gave up as well and put their hands down. As it was impossible for my family to receive medical treatment outside of my country. We didn’t know how to deal with it, where to go and what to do.

But I didn’t put my hands down. I prayed and continued to believe in miracles. During two painful years I prayed but my condition got worse day by day. At some point painkillers stopped helping me. As taking painkillers for a long period of time without proper treatment resulted in opposite reaction, my body simply couldn’t take it anymore. Which caused me having even more extreme hard pain on a daily basis. So hard pain that I couldn’t think of anything, I screamed and sometimes lost consciousness. I couldn’t walk. I couldn’t lie down. I could sleep only in a sitting position, and for 15 minutes long. It was very difficult to eat. Such a lifestyle ended up with adding a new problems to my major one. I started having problems with my back and legs.

And then in 2013 a miracle happened. I was given a chance in Israel (I am thankful to all people who helped me to get there: to my friends and classmates). I was given a diagnosis of “Interstitial Cystitis” with Hunner’s ulcer. This is an incurable disease. And the most sad is that I got this by neglecting, the wrong medical treatment and lack of knowledge of doctors from my country.

In 2013 I’ve started “fighting” for my body, for my bladder. Since 2013 I am having some “stretching” of my bladder every year, taking some medicine with hyaluronic acid into my bladder every month. In 2016, doctors were satisfied with results of “stretching”. But in 2017 I was told that my bladder must be moved off. I have to visit WC more than 50 times per day, even after “stretching” I’ve had on 7th of June 2017). My life is full of aches and pains, my nights are sleepless.

This surgery is very difficult and hard. Local doctors, whom I dealt with, couldn’t give any guarantee I will be okay after surgery. Having such a sad experience of dealing with local doctors for 12 years, I got to the point when I am scared for my life.

In France, such a difficult and intricate surgery can be done by robot surgeon Da Vinci. My sick bladder will be moved off and a new one will be created from my rectum. After this I will be able to visit WC like any other people without any tortures. The cost of this surgery is 25400 Euros.

It is necessary to take care of my body and condition till I have this surgery. I must to take different medicine, including very expensive cystistat (hyaluronic acid) from Germany. All this cost around 300 USD per month. I am not able to pay such amount of money every month, because I don’t have them. So, not taking some medicine in time is getting things even worse. And delaying with cleaning and stretching my bladder in time resulted in very bad situation when the bladder must be moved off.

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My dream

I lost my job long time ago, in 2008, because of sickness. I didn't want to loose my mind because of this so I've started painting. When I am painting I am fully plunging into beautiful world of dreams, creativity and fantasies. And I like to listen beautiful music. I always wanted to learn dancing and singing professionally. I used to have a lot of plans for my life: to become a famous artist, a dancer, to sing. To give people good, joy and gladness. And of course to become a good mother. I would pass to my children my love and passion for life, world and people. I hope this dream will become true one day. When I was a little girl I was lucky to visit France (kids health program). I fall in love immediately. Since then I have a dream to travel and see the world. There is saying "To see Paris and die". But I want to return to France to save myself. And get my normal life back. I am sociable person that is easy going to a contact. If you want to communicate with me you can always contact me by e-mail or social networks (where you can also find my art works).

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